Yeah I have pain meds, but it really isn't the long term solution I wanted. They help but make it far from a "normal life". I was hoping they could lyse the adhesions causing the issues but it just seems there is no way to see them or isolate the ones causing problems. I have a follow up with the surgeon next month--the last one--but given the scan showed nothing, I am not optimistic.
Hi Duck,
I say keep looking for help. I say this because I had severe localized abdominal pain, repeated partial small bowel obstructions, and utter misery. I went to see the surgeon who was following me, and he didn’t even bother to examine me—he told me to ‘live with it’. I wasted eight months suffering after that, depressed and in absolute misery, and finally decided to see someone else. New GI doc diagnosed me with pouchitis and said he could fix me in a month. 6 months of abx later, no dice, and he wanted to start biologics. I said no—history of infection after Jpouch surgery, and I thought I might have an abscess or something. Had to beg for an MRI and got told off for ‘directing my own care’. But he had to eat his words, and I didn’t die from his stupidity because I protected myself—MRI showed chronic infection.
At laparoscopy, I was found to have a massive adhesion from a leaking j-pouch (leaked from the upper staple line 4.5 years after index surgery, probably due to allergy) and had to have a portion of bowel resected. My surgeon (a different one—the fourth one I consulted) said it was like concrete.
It was a hard recovery, but I no longer get bowel obstructions or abdominal pain. I can eat fiber, soluble or insoluble, and I no longer have to suffer severe pain for twelve hours while my body is trying to decide which way to send the stuck food.
Keep looking. If you can have a consultation in the US, try Dr. Remzi at NYU. He doesn’t look at the imaging, which in my case was a limitation, but in your case, if nothing is showing up, he might still offer you an exploratory laparoscopy. I mean, really, compared to your symptoms, having a laparoscopic surgery to see what’s going on is not bad. I cannot understand why your surgeons won’t consider trying that; it could really help your quality of life, and it doesn’t cause significant adhesions compared to a laparotomy (open surgery). A skilled surgeon can at least look around with a scope, and it’s a ton more useful than imaging, especially when the imaging isn’t sensitive enough to pick up the site of your problem.
If you can get a referral to a major academic hospital in your province (assuming that’s not where you go already), you can possibly get someone to do this. I’ve learned not to go to local docs/smaller hospitals for complex stuff—they don’t know how to handle it, and they hide their ignorance by telling you nothing can be done, instead of saying ‘I don’t know what this is, but it might be worth seeing so-and-so (regional expert) to make sure there isn’t something going on...’ Egos are so fragile sometimes, especially in surgeons, but I have found it to be mostly a disease of males. My women surgeons were remarkably forthcoming about the limits of their own experience and were happy to refer me to the expert.
I would be very careful about the capsule—it is not a sensible thing to do when you have intermittent obstructions. It’s frankly a huge risk for a disaster. I hope the doctors there would be sensible enough not to try that. A laparoscopy, though more invasive, is the most direct way to assess the problem when imaging fails.
Or else blend all your food and/or avoid insoluble fiber. Soluble fiber is easier to pass even with a stricture or adhesion. Eat soft, tender meat and chew it well; eat only baby greens (no stems) and non-seedy fruits and well cooked vegetables, all chewed completely; drink enough water; try blending smoothies if you want to eat anything that doesn’t fit this.
Of course, none of this is easy when you have an infant to look after, but it doesn’t help the baby when you’re incapacitated, either... I don’t miss that year and a half of abject misery and having to chew each bite 100 times. That didn’t fit my busy life. So, I restricted my diet to limit the number of episodes, and that helped, but it was a temporizing measure until I could find someone smart and brave enough to investigate properly and treat me.
I wish you the best of luck.
Athena has several good ideas. I was eating vegetable protein, not whey, smoothies made with fruit and veggies plus yogurt most of the time for 8-12 months before having my diversion to an ileostomy. When I did have meat it was chicken and didn't have beef for at least a year either.
My surgeon at Mayo's was a woman and she spent 3 hours lysing adhesions during the lapro surgery to divert me. I still had pain but could eat more solid foods again. She then spent 5 hours, out of an 8 hour surgery, lysing them during the j-pouch removal surgery.
The local surgeon that did my j-pouch and hernia surgeries told me that there was noting to do and I'd have to live with it. He had ordered a barium x-ray test done and there were no blockages. I looked at those x-rays. The barium made my intestines white on the film. Of course I wasn't having an obstruction problem when the test was performed. I felt he just ordered a test so he could dismiss my problem.
My GI at Mayo's was a man and I didn't feel dismissed, like I did with the local surgeon. I think it was the higher caliber of doctors at Mayo's not necessarily the sex of the doctor that was the difference.
I have information that should help with financial assistance for people living in Canada in Intestinal Bowel Disease.
Canada has a program called the Disability Tax Credit for which most people suffering IBD are entitled to. For those who do not earn a lot, there are also grants available. There is also a fund for those 49 and younger that you can contribute to to which the government of Canada also matches contributions (although one must wait until 69 before access this money otherwise there are penalties).
In addition, in Canada one can go back 10 and refile the last 10 years worth of tax returns, therefore if you have been living with this disease for longer than 10 years, a sizable amount can be had.
This is a legitimate program from the government of Canada (you can research it) and has nothing to do with one's ability to work (e.g. people in a wheel chair are handicap but they can still work). The basic requirements is that a doctor certify the following:
1. That the person is living with the disease (indicate when first diagnosed with the disease)
2. That one spends more time in the toilet trying to pass stool than the average person
If a doctor certifies these condition (by filling out the Government of Canada disability tax credit form), there is an excellent chance to be classified as handicap and entitled to the benefits of this program.
I myself suffer from UC and I have benefited from being part of this program. One has nothing to lose by filling out the proper form and getting your doctor to sign it.
You can contact me privately if you have any questions and I can provide information in filling out the forms. FYI, I am no interest in any financial gain. I only to help people suffering from horrible diseases like Ulcerative Colitis and Crohns.
The process was quite easy for me and the government was very cooperative. The Federal and provincial government accept my application without question.
Best Regards,
Solomin
Thanks Athena for chiming in--you've given me some hope. It's been really hard not to sink into a depression with all of this, like, "is this going to be life for the rets of my life"?. I have my second-opinion consult with a surgeon tomorrow--fingers crossed. My MRI didn't show anything, but maybe she will go beyond it and try other things as you've said. I'm just so jaded now from this entire experience of no one wanting to help. Also, thank you Solomin for the disability tax credit info--I may need to look into that as I don't know how I'll return to work after my mat leave being ill 8-15 days/month. If this last surgeon has no answers, I don't know what to do--I'm in Canada so cannot access American doctors since our health coverage is only for within Canada.
HI all. I just had my consult with the 2nd surgeon--not a lot of good news but she was at least very compassionate. She is going to do another scope herself to see if there are any weird angles etc. above the pouch that could be causing the obstructions. It is interesting how the scans I've had are interpreted differently (others that were said to be clear, she said they were not and showed various things that were a bit odd). She also mentioned my pouch looked like it had "grown" since August. Has anyone heard of this? She said exploratory laparotomies are not a good idea indwell likely cause more problem s than they will solve. So, here's hoping SOMETHING will be seen on the scope, otherwise it's a life of disability for me. I asked about getting a permanent ileostomy and again, it might help, but might not. Thanks all for listening.
The Pouch expands but only in the first year or so after surgery, not 20 years after surgery. When I had surgery I was specifically told by my surgeon to resist the urge to defecate and hold my bowel movements as long as possible in order to stimulate the Pouch to expand. I thought this was a pretty fundamental standard drill with anyone who gets a J Pouch. In any event it isn’t really clear what is meant by the comment that the Pouch “has grown.” There is a period of natural growth and you would appear to be long past that, unless something else is meant.
Yes our j-pouches grow. I think it is normal.
I'm glad she is going to do a scope. Lets hope she figures out something to give you relief!